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Living with cancer

Author: Laurie Wertich

Cancer is not always a death sentence. It can be a life sentence—a call to live life to the fullest even in the face of disease. Just ask Joe Mills, a safety manager for a small trucking company in Bloomington, Illinois. Joe was diagnosed with stage IV cholangiocarcinoma (bile duct liver cancer) in November 2011. In the past year, he has undergone chemotherapy and surgery—and he has continued to work and enjoy his life with his wife and family.

“I try to live as normal a life as possible,” Joe says. “I bike-ride every chance I get. My wife and I go for a lot of walks and out to the movies—anything we can do to take the focus off of illness.” Joe is one of a growing number of people who is living—and living well—in the wake of an advanced cancer diagnosis. Yes, you read that right: Joe is living well with cancer, fueled by a desire to be fully engaged in life and not about to let cancer get in the way.

Defining chronic cancer

Some cancers are considered curable. After successful treatment, patients go into remission and move forward to survivorship. Other cancers are considered incurable; there is treatment but no cure. Once upon a time, incurable cancers were referred to as terminal but not now. There is a new term for these cancers: chronic. “The paradigm change is that we’re starting to look at cancer as a chronic illness as opposed to an acute illness,” explains Simeon Jaggernauth, DO, a medical oncologist at Cancer Treatment Centers of America® (CTCA) in Tulsa, Oklahoma. “It’s sort of like diabetes, hypertension, AIDS, or hepatitis C. These are illnesses that people have and can be treated for, but they’re not curable.”

In fact, a cancer can be considered incurable but quite treatable. Thanks to new and innovative developments in cancer treatment, patients can live a long time with cancer—and with is the key word here. Patients with chronic cancer are living with it, not dying from it.

Living well with chronic cancer

“Chronic” may sound better than “terminal,” but it’s still an enduring challenge. Chronic means “all the time.” In other words, if you have chronic cancer, you will live with this cancer for the rest of your life. That may sound like an ordeal, but there are an increasing number of tools to help patients manage for the long term. Despite cancer and ongoing treatment, it is possible to live well with the disease.

“As people are living longer with cancer, we want to make sure they can maintain quality of life,” explains Tracy Whitworth, RN, a survivorship nurse at CTCA® in Goodyear, Arizona. “We want to help patients not only contain and manage the disease but also live well with it. We want patients living life and creating memories.”

Whitworth’s role is to look at the big picture. She works to balance disease management and quality of life. It’s her job to know her patients—really know them—so that she can help them strike the optimal balance between life and treatment. Whitworth examines work/life balance issues, fatigue, pain, and much more in assessing her patients. Then she pulls out her “tool bag” and connects patients to the appropriate resources.

“We really encourage patients to utilize all of the wonderful complementary treatments we have here, such as naturopathic medicine, nutrition therapy, mind-body medicine, acupuncture, and massage,” Whitworth says. “The data support that these are very helpful to keep everything in tune.”

This balance—between treatment and quality of life—is the cornerstone of managing chronic cancer. “In a perfect world, we want the treatment to obliterate the cancer but not affect quality of life,” Whitworth says. This may sound like a lofty goal, but it’s one that is more and more realistic as cancer treatment changes.

Treating chronic cancer

New developments in cancer treatment have changed our ideas about the best way to treat cancer. “The goal of treating chronic cancer is to maintain quality of life. Patients will live well if they are treated well,” explains Dr. Jaggernauth. Treating patients well means shifting the way in which we deliver the treatment.

“This disease called cancer is chronic,” Dr. Jaggernauth insists. “The way you treat a chronic disease is by giving chronic treatment.”

This important recognition that cancer is appropriately viewed in an increasing number of settings as a very serious but chronic illness has led to the development of strategies that consider the potential impact of long-term side effects. Common long-term issues include persistent fatigue and continuous numbness and tingling in hands and feet.

Investigators have begun to explore the use of the more frequent administration of anticancer drugs at lower doses that have the potential to maintain or even improve the effectiveness of therapy while actually reducing side effects. For patients whom doctors anticipate will be treated for long periods, for example a year or longer, a “treatment holiday” may be used to permit the body to recover from the effects of cancer treatment.

Patty Marshall’s experience is an example of the benefits of an approach that focuses on the chronic nature of cancer treatment. In May 2007 Patty was diagnosed with stage IV breast cancer that had spread to her bones. She decided right then that cancer will not kill me. Patty immediately started an innovative weekly treatment program. The treatment not only controlled the cancer but also allowed her to maintain her normal routine.

“I never did stop anything in my life. I volunteer at the church preschool on Wednesdays, and I missed only one day because my white count was low,” Patty says. “Even through all 24 chemotherapy treatments, I have not been sick; I have not thrown up. I have maintained my life.” Saying she didn’t stop anything is an understatement. In fact, her coping method was to stay busy. Patty lives in Thayer, Kansas, on a cattle ranch. Throughout her treatment she continued to ride horses, work, and garden—and she even took a two-week vacation to a dude ranch in Colorado. Stay busy doing what you love to do is her motto.

Treatment advances

“There are new technologies that have also changed the way we treat cancer,” Dr. Jaggernauth explains.

These new technologies include targeted agents, which are drugs designed to attack cancer cells while sparing healthy cells, and immune therapy, which fights cancer by stimulating the immune system.

Melanoma, the deadliest form of skin cancer, may soon be considered more of a chronic illness because of the impact on the disease of targeted agents and immune therapy. “In the past few years, targeted agents have changed the way we treat melanoma,” explains Dr. Jaggernauth. “People are living longer with the disease.”

What’s more, the way in which we deliver treatment has changed. “There are lots of different ways to administer medications now,” Whitworth explains. Oral chemotherapy is sometimes less invasive, and there are a lot of options available to help combat side effects. “We’re going to arm you—give you an arsenal of good stuff—to help minimize or alleviate side effects,” Whitworth says.

Preventing Complications Despite advances in treatment, chronic cancer can be rife with complications. “Patients are doing much better than before and living longer,” says Richard Schmidt, MD, medical director of orthopedic oncology at CTCA in Philadelphia, Pennsylvania. “The spin-off of that is that because they are doing better and living longer, they are developing metastatic sites to the bones.”

These bone metastases can cause pain and even fractures, which can result in a spiral of complications. Dr. Schmidt says that in the face of metastatic cancer, it’s important to be proactive and prevent fractures. One way to do this is through a procedure called prophylactic stabilization of the femur, which involves putting a rod or pin into the thighbone to prevent it from breaking.

The femur is one of the most common sites for bone metastases, and a broken femur can have devastating consequences, resulting in invasive surgery; a long, slow healing process; and loss of mobility. In contrast, a prophylactic stabilization can be performed through two or three small incisions, and the rehabilitation from the procedure is minimal.

Dr. Schmidt performs a lot of these procedures in an effort to help patients maintain quality of life and remain mobile and independent. “From a holistic standpoint, it is important to keep patients active, mobile, and in charge of their own destiny,” he explains.

A patient who has bone pain or evidence of disease progression might be a candidate for the prophylactic procedure. When a magnetic resonance imaging (MRI) scan indicates disease progression, Dr. Schmidt says, it’s important to address it up front. “Let’s not wait for a fracture to occur,” he says. “Let’s be proactive and treat it with a more minimally invasive procedure.”

Be your own advocate

Living with chronic cancer is not without challenges. Whitworth asks patients: “What is it that you want to do, and what is stopping you?” Then she works to help them address those challenges. She says that it is imperative that patients discuss their concerns with their health care team. “We’re here to help, but we can’t help if we don’t know what the issue is,” she explains.

Dr. Schmidt echoes this sentiment and says that it is important for patients to pay attention and ask questions. “Patients really need to ask their health care provider: ‘What is the status of my bone health? Are my bones involved yet or not? Should I get a bone scan?’ ” he says. “A lot of times we focus on the primary lesion, and we tend to get outflanked a little bit. The patient is complaining of bone pain, and no one does an X-ray. If you have bone pain, insist on getting an X-ray.”

Coping with chronic cancer

Ultimately, the most important aspect of living with chronic cancer may boil down to effective coping strategies. The most innovative treatment approach and the best supportive care can only do so much. If you’re mired in fear and stress, it’s going to have an impact on your overall outlook and quality of life.

Joe says that though he has encountered fear and stress, his faith has provided strength and refuge. “Before cancer came along, I knew God in my head, but I didn’t really know him in my heart,” he says. “What has happened the most with this cancer is the development of my faith. I know now that man is limited, medicine is limited, but not God.”

Throughout his treatment Joe has had numerous conversations with God. “I realized I could focus on the disease or God,” he says. “I could focus on the illness or focus on living. I decided to focus on living. It is my faith in God that provides strength, peace, joy, and comfort when fear tries to creep in.”

Patty took a similar approach. She decided to stay busy and surround herself with friends and family. “A positive attitude is very important,” she insists. “Life is precious. Enjoy every single minute of it because none of us knows when we could be taken out of here.”

Patty’s faith was instrumental in her journey, also. “Put God first. If you let God help you, you sure get along a whole lot better.”

Joe uses an auto-racing analogy, explaining that when drivers are going through a high-speed turn, they’re looking at marks on the pavement rather than the wall that they don’t want to hit. “That’s how I live my life with or without cancer,” he explains. “I focus on what I want to achieve. Cancer wants to steal joy and steal life, but love will conquer it. So focus on love, joy, and life.”

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